Chronic illness and shame: the disconnect between the healthy and the chronically ill

@laurafaraci / Adobe Stock

Words can hurt and scar. Words may hurt, but words have the power to heal. Chronic illness and shame plague me. But living with chronic illness needs to be devoid of shame and ableism. The time for change and understanding is now. The time for cultivating conversations of changing the reality of chronic illness is now.

When I was diagnosed with my first cancer, no one warned me about chronic illness and shame. No one told me how I would be met with the reality of being pushed aside and forgotten. No one told me that friends would abandon me during my illness.

When people started taking the nearest exit to extract themselves from my life, I tried desperately to hold onto them. I wanted them in my life; with illness, I felt I couldn’t keep friends. People became fearful of me dying and made amends with me encase I didn’t make it through my treatments. People doing this made me feel less than human; I was being dehumanized.

The shame I felt was strangling me, I did what I could to keep my cancer a secret, and when I was diagnosed with the second, I told no one. I didn’t want to lose more friends because my life was too hard for them. I felt people making this excuse was hurtful. 

Aren’t friends supposed to be there for you through thick and thin no matter what? I would ask people who leave their spouses, family, and friends who are sick to think of this, what if you got ill and needed someone there. How would you feel if the people you loved abandoned you? I was left more often than not. And I thought at least I have my husband, or so I thought.

Read more: How to cope with a chronically ill souse?

Over time I got sicker, a congenital disease arose in full swing, and the diagnosis rolled in, one rare disease after another, and their comorbidity engulfed my life. The next thing I knew, the man I married checked out. He became abusive. He told me he wanted to be single. I was dumped because of chronic illness

How did this happen? How did a life I lived go from being a part of something to being an outsider in every possible way? No one was strong enough to shoulder the weight I carried, no one but me. 

No one tells you how people around you may burn themselves out trying to help you and end up in a state that is called care-takers-burnout. Caregiver burnout is a state of mind where the caregiver can become abusive towards the person they take of, this is not always the case, but it can happen. 

Everything I went through made me feel like I was a burden. Chronic illness and shame weighed heavily on me. I had to learn to love myself, something I did not do. I lacked self-compassion, and I must find my way back to being me again.

Therapy helped me find myself; it helped me discover my hope again. Drawing and writing have gotten me through all of the hardships and have helped me to cope. I know I am not a burden. I know I should not have shame about my chronic illness. I live with complex illnesses. Living with these illnesses does not make me less than human; I may remind people they are mortal, but those trying to escape the deadly fate are mistaken. 

We all live, we all die, and treating people who are sick with respect and depravity can come back to haunt you in later life as none of us get out of alive, and none of us are exempt from diseases. Therapy helped me realize the people who were leaving my life were ableist; they were not strong enough to cope, which had nothing to do with me. It took me a long time to accept this.

I am not an inspiration for a health privileged person to use me as their fuel to go after their dreams. I am chronically ill, and I am doing what I can to chase after a dream I long for; I try to do things, and my body does hold me back. I will not be ableist with myself; I will be patient with myself and acknowledge I need rest. 

I am doing what I can with my abilities by attending university and applying to galleries. I am human and deserve to be treated as such. I hope someday the gap between the chronically ill and the health can be bridged. I hope someday that having a chronic illness carries no shame.  Opening the awkward conversation is where this starts and being vulnerable. 

Being open with what we live with is essential. It is vital to remember awareness is different than complaining. If we talk about the challenges, we face we can open others’ eyes. Keeping everything inside is not suitable for our bodies or livelihood. Our voices are vital for bringing about change and ending the shame and ableist views attached to the illness.

Words can hurt and scar. Words may hurt, but words have the power to heal. Chronic illness and shame plague me. But living with chronic illness needs to be devoid of shame and ableism. The time for change and understanding is now. The time for cultivating conversations of changing the reality of chronic illness is now.

When I was diagnosed with my first cancer, no one warned me about chronic illness and shame. No one told me how I would be met with the reality of being pushed aside and forgotten. No one told me that friends would abandon me during my illness.

When people started taking the nearest exit to extract themselves from my life, I tried desperately to hold onto them. I wanted them in my life; with illness, I felt I couldn’t keep friends. People became fearful of me dying and made amends with me encase I didn’t make it through my treatments. People doing this made me feel less than human; I was being dehumanized.

The shame I felt was strangling me, I did what I could to keep my cancer a secret, and when I was diagnosed with the second, I told no one. I didn’t want to lose more friends because my life was too hard for them. I felt people making this excuse was hurtful. 

Aren’t friends supposed to be there for you through thick and thin no matter what? I would ask people who leave their spouses, family, and friends who are sick to think of this, what if you got ill and needed someone there. How would you feel if the people you loved abandoned you? I was left more often than not. And I thought at least I have my husband, or so I thought.

Read more: How to cope with a chronically ill souse?

Over time I got sicker, a congenital disease arose in full swing, and the diagnosis rolled in, one rare disease after another, and their comorbidity engulfed my life. The next thing I knew, the man I married checked out. He became abusive. He told me he wanted to be single. I was dumped because of chronic illness

How did this happen? How did a life I lived go from being a part of something to being an outsider in every possible way? No one was strong enough to shoulder the weight I carried, no one but me. 

People have told me they would have killed themselves if they had my life, they would have given up. Does this mean they think I should kill myself? What kind of thing is this to say to another human being? Where is humanity? I will not end my life because some else can not handle the hardships I face in my life. I was not given a choice; I have to carry on to survive.

No one tells you how people around you may burn themselves out trying to help you and end up in a state that is called care-takers-burnout. Caregiver burnout is a state of mind where the caregiver can become abusive towards the person they take of, this is not always the case, but it can happen. 

Everything I went through made me feel like I was a burden. Chronic illness and shame weighed heavily on me. I had to learn to love myself, something I did not do. I lacked self-compassion, and I must find my way back to being me again.

Therapy helped me find myself; it helped me discover my hope again. Drawing and writing have gotten me through all of the hardships and have helped me to cope. I know I am not a burden. I know I should not have shame about my chronic illness. I live with complex illnesses. Living with these illnesses does not make me less than human; I may remind people they are mortal, but those trying to escape the deadly fate are mistaken. 

We all live, we all die, and treating people who are sick with respect and depravity can come back to haunt you in later life as none of us get out of alive, and none of us are exempt from diseases. Therapy helped me realize the people who were leaving my life were ableist; they were not strong enough to cope, which had nothing to do with me. It took me a long time to accept this.

I am not an inspiration for a health privileged person to use me as their fuel to go after their dreams. I am chronically ill, and I am doing what I can to chase after a dream I long for; I try to do things, and my body does hold me back. I will not be ableist with myself; I will be patient with myself and acknowledge I need rest. 

I am doing what I can with my abilities by attending university and applying to galleries. I am human and deserve to be treated as such. I hope someday the gap between the chronically ill and the health can be bridged. I hope someday that having a chronic illness carries no shame.  Opening the awkward conversation is where this starts and being vulnerable. 

Being open with what we live with is essential. It is vital to remember awareness is different than complaining. If we talk about the challenges, we face we can open others’ eyes. Keeping everything inside is not suitable for our bodies or livelihood. Our voices are vital for bringing about change and ending the shame and ableist views attached to the illness.